Monday, September 20, 2010

the hits just keep on coming

it has been so long since i had a chance to write last let me first say thank you for continuing to check the blog and having faith that it will, at one point, get updated again! gavin has been in and out of the hospital - we had him home from the NICU the first time for 30 hours, then rushed back to the ER and readmitted to the NICU for another 16 days - then home again with us for 10 days and back by ambulance to the ER at Banner Samaritan before being transferred to the PICU at Scottsdale Shea on September 9th.
we brought gavin home (again) last wednesday the 15th.
we had another scare over the weekend as his heart rate was tracking in the 180/190s and i couldn't seem to bring it down. he has had horrible gas from his feedings and so with that and his obvious lung disease i called everybody i could think of (pediatrician, NICU, PICU...) and the bottom line is that i didn't get a lot of direction as it's all one big cat and mouse game because nobody wants to step on anybody else's toes with telling us what to do for gavin other than "you might want to just take him into the ER."
for us, we feel torn either way: we take him in and he gets IV'd, poked prodded and a bunch of tests run plus being subjected to potential illness VS. leaving him home with us and keeping him there too long to where we put him in harms way because has no lung reserve. tracee and i just cried on the couch saturday afternoon as we experienced this dilemma. we are worn out and always on edge with what to do for him.
tracee's parents came over and helped us keep an eye on gavin saturday night. we just prayed and cried out to God for mercy and grace. tracee concluded that we should put him down and let him swing for a bit to calm down. her mommy intuition was good and gavin began to settle down and his heart rate started to come down into the 140/150s range where it should be for gavin.
he has been fighting a cold for the past few days and i think i already mentioned the gas but it really irritates him and puts him on edge for hours at a time.
tracee and i are shifting with gavin throughout the night: i typically sleep from about 10 - 1am and then she goes to sleep from about 1am - 7am and then i go back to bed for a few more hours.
saturday night, tracee was hit with her epilepsy condition that comes on when she doesn't get enough sleep and/or is stressed out. it makes her shaky and causes her to drop things. cleary with that going on, she wasn't able to care for gavin so i stayed up with him all night and allowed her to get about 9 hours of sleep. that was exactly what she needed as she felt better by 1pm on sunday afternoon. once again tracee's parents came over to help relieve us so i could go back to bed - i slept from 10am - 3pm to get caught up.
here it is monday morning and i'm back to work and tracee is home with the day nurse getting ready to take gavin to his doctor's appointments at the hospital to see the developmental pediatrician. everyday it is something: pulmonologist, pediatrician, physical therapy, evaluation appointments, etc...
pray for relief for us. pray that an end would be in sight and that we would be able to get the break we so desperately need. we are both very frustrated and ticked off at this point. i don't know what else to do and a lot of times i have no words for what we are going through. it's so painful to watch your bundle of joy suffer in front of your very eyes. we pray for very real needs like normal breathing with normal lungs. we don't pray for trivial things like a new car or a really great vacation.
i'm not sure what post traumatic stress disorder looks like but i can imagine that tracee and i are dealing with it. i can't imagine that it is any good for your body to live off of adrenaline for 6 month's straight but that is what i've been doing.  WE PRESS ON! we don't have a choice - we are fighters and we will push through the crap and get it done. gavin knows that when he cries for mommy and daddy that we are there and that we will be there every step of the way.



  1. keep pressing on. we are all with you in prayers. I pray that God delivers you guys and Gavin from this physical problem. I pray that he gives Gavin's body the strength to get past it all and grow and be healthy. I pray for your health, emotionally, physically, mentally, maritally! We love you and are praying for you.

  2. A friend of mine Jean sent a link to your blog asking for prayers for you.

    I remember having to handle my babies when they had colic. All the hours of crying. I remember how frazzled it made me and just plain tired. You have that and so very very much more to handle at the moment.

    You two are loving your child wonderfully and doing your very best to provide for him and do right by him. The responsibility of parenthood is a big one. Sometimes a heavy one. Everyday he makes it, everyday you make it, is one day closer to him being healthy and safe. I do not know when that day will come for your family, the one where you feel out of the woods. I wish I did. Sometimes not knowing when it will get better is discouraging all on its own. It's almost as if seeing the finish line is motivation all on its own. At this moment in your lives, each successful day is an amazing finish line for you.

    It makes me happy to know that you have family that are willing to step in and help as well. Bless them.

    I know you are discouraged. I think anyone in your situation would be. It's times like that when we really learn that the only thing getting us through is God. When life gets to be too much and i find myself on my knees more then on my feet, there is one thing I always pray for (among the pluthera of other prayers) and that is that the Lord will help me to focus not on whats tearing me apart, but on whats keeping me together. I pray that for you as well.

    And above all, as impossible as it seems, do not forget to find time for you, and you and your wife. Even if it's just a few minutes. Parents need time to rejuvenate as well.

    If there were magical words to say to help ease some of your troubles, I wish I knew them so I could say them to you. If there was a magical suggestion to make to help calm your fears, I wish i knew what that was so I could suggest it to you.

    But I know none of those things. I do know a great God though. And I will join all the others that are lifting up you and yours in prayer to him.

  3. My Friend sent me your blog, asking to lift your family up in prayer. I have a bible study, and we will all be agreeing in prayer for complete body Healing. That only God can give. He is so big. I believe that he can do this.
    Dont give up. Have faith. God is mighty. I have no clue what you are going through. I know it must be horrible. It is great to hear that you and your wife are teaming up on the situation and together on it. If you both keep your eyes on Jesus, keep praising him and crying out for Him, He will move.

    I will be praying for a fast healing!

    God, I thank you for the healing that you are giving Gavins body right now. I thank you that you have given him amazing parents who are fighters and I ask that you would strengthen them and give them rest and peace. I pray that they would draw closer to you during this time. Heal Gavins lungs and his body, allow him to be able to eat normally and breath normally just as you have created us to work perfectly. Thank You God! You are amazing! Let the healing begin God, Right now God!!! In Jesus Name! Amen

    Southern Oregon

  4. Our church staff prays for each of you every Monday. The life group which meets in our home on Wednesdays is vitally concerned with Gavin's progress. All across the globe at any hour of the day, people are prompted by the Spirit to lift up your little family in prayer. You guys are raising a little fighter! God bless you today. ♫

  5. Praying for your life will be filled with the love of Jesus...that he will bring you relief & rest...until then, stamina to endure each situation you are put through.

    Love you guys & please bring us prayer requests, we will lift them up for you...Let all of us do some of this heavy lifting...

    May God's face shine upon you all today.

  6. My heartfelt prayers for you and your son!

  7. I don't know you, but a friend sent the link. I have shared it with others too. I really appreciate this post, as you are not masking the pain and weariness. I pray you continue to hold fast to the One who knows your pain better than you know it yourself. Thanks for being real.

  8. Thank you everyone. We are blessed by how far this travels and by how many join us in our struggle and pray for healing and relief.

    Jeramy, Tracee and Gavin